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Lupus is a chronic, auto-immune disease in which the body's immune system forms antibodies that attack healthy tissues and organs. If left untreated, lupus can be serious and even life threatening. Here I share how I am using my artwork and learning music to navigate me towards a simple goal of daily peace~

Bright Bird

scroll way down to view my Hawaiian photos and don't forget to feed the fish!

Sunday, March 31, 2013

~ last June 2012 I flew off the 3 back steps and landed on my head, shoulder and ribs. This resulted in a compounded concussion, severe bruising of ribs, shoulder and head and vertigo. I could not move my head without violent vomiting. I was then heavily drugged for 2 weeks. They wanted me to just sleep, but that had to be sitting up. Try looking straight forward and do not move your head and now do something, anything. Go ahead try it, what you gonna do? Also the number one rule with healing a concussion is no caffeine or alcohol. I was now out in the country with my dog and being my very own detox center! But believe me I felt like I had the worst hangover ever and moved like a sloth. It was great comfort that Gracie never left my side for those first two weeks. I would reach my hand out to touch her constantly.
After the first week I began my first vertigo therapy treatment at the LMH Hospital in the Kreider Rehab unit under the care of fabulous Stacia Bone. A year earlier my mother had suffered from loose crystals in her ear canal. So I was familiar with the issue at hand and yes, it sounds weird that if the crystals in your ear fall off then you got problems. But google it, it is true!
Now my 61st birthday was coming at the end of the month and my son Hagen and his girl friend Nikola were planning to get me a 'ukulele. So we had been researching the size and style that would be just right for me. In fact we found THE one on Amazon. Paul decided he wanted to check out Mass Street Music and so while I was in treatment he was off. When I came out of treatment there he was in the waiting room with a gig bag in his lap with a new concert mahogany Kala 'uke inside it. Mass Street Music had matched Amazon's price and even had the very same 'ukulele we wanted.
But, I was just trying not to throw up! The treatment involves rolling and most people vomit during it. I was so proud that I had not but strictly was not allowed to move my head at all for the next 24 hours while my newly replaced crystals re bonded to the hairs in my ear canal.
So after going back home I was just so out of it. Paul left. I looked at the new 'uke. I have never played an instrument. So I sat down at the computer and since I could not even look down I held up the key pad to the iMAC. I typed in You Tube and pulled up 'ukulele strums. Then I scooted back since I couldn't see clearly and picked up the 'uke and started to strum following along with the video. This was the first connection I felt between my mind and my body since the accident.
Since the concussion had changed my eye sight I couldn't paint. Paul took Gracie out for her business until I was more steady. I could not drive yet. So being stuck inside at home I began to play the 'ukulele learning off of You Tube tutorials. After a month or two I found out about getting a scholarship at the Americana Music Academy in Lawrence. That hooked me up with my 'uke teacher Linda Tilton. She has the ability to challenge me without overwhelming me. I am sure her easy approach is what is keeping me stoked about playing. I was even in the Christmas music program for the Academy playing and singing on a stage!
One important issue arose when Paul bought the ukulele that day. Even though he checked with our son Hagen to see if it was okay as he stood there in the music store, it stole Nikola's thunder. You see this was a little bond she and I had developed after her parents had given her a ukulele. I kept asking if she wanted to sell it... she thought she should just get me my own! So I always think of Nikola when I play and I hope she feels that all her good intentions are received daily. It was very crucial in my healing that I was handed my 'ukulele at the time that I was. Lucky me all around for the families effort in a great gift.
I now have a second 'ukulele. Got my eye on a third even..... and I know that playing them is healing my brain in a way that gives me more cognitive function in everything I do. The most noticeable improvement is in my memory. And at my age that is very cool!

Friday, March 29, 2013

For years I have enjoyed orchids. They are easy to grow and in Hawai'i the climate permits them to grow wild. So a good trigger to promote that simple daily happiness around you is to be sure and have these or what ever flowers you like close at hand. This winter my orchids have been thriving in the sun in the back room of this small farm house. Everyday I see them and that triggers me to stop and take a moment to take them in. I feel good that I am growing them, I can run for the camera and shoot pics of them and I touch them. Sometimes I also get flowers once a month from Trader Joe's when I go into KC for my monthly food run. There is a variety I like that lasts gorgeously for 3 weeks! It is the best $3.99 that I can spend on myself. I am worth it even though I am totally poor ~and I can say that because I know some of you understand living on disability too ~ this is a management of my illness that is just as important as taking my meds. And they are easier to swallow ...Bahahahaahaha...

One cool thing about the local farmer's markets is that there are great flowers to buy when in season and you are supporting local growers and their families too. Even if I can only afford one flower, it is a real gem to bring home and set in a special place to enjoy. *you can scroll down to an earlier post titled The Good Triggers and see more of my experiences and suggestions for more positive ways to cope.

Monday, March 18, 2013

After an accident June 1st, 2012 that left me with a 2nd closed head injury and concussion vertigo I am making a post in over a year I think. The summer and fall 2012 was spent sleeping pretty much. During the year the highway 59 moved a mile behind east of us in October and Gracie has begun to show signs of growing up. She likes to burrow under blankets to sleep, bark for what ever suites her requests and isn't shredding Paul's bed sheets lately......she also sleeps more. But she still needs lots of exercise and it has been a long winter ...like all winters go.
Another issue for not posting is that the blog spot format changed and I just today had wonderful help from my son Hagen on how to get into my blog again. Thanks!

I have indeed learned that sometimes I just do not enjoy writing about SLE Lupus. But that is a common issue with health. Just tuff through it and try not to let it get you down, yeah? My best advice to those of you is to focus on all the positive that you can gather in by any means. Just be happy any way that you can.
Then, I know there is not a big following here for reasons of not getting out there and getting connected. I will be creating an ART J'shui site and moving my art work there. It has taken me 3 years to get my art photographed and the files ready to print. This year 2013 I plan no art gallery shows, just exploring other art interests and painting for me and hopefully selling art too! Gracie is giving me that look....... I'm waiting 'Mom'..... yep, it is nap time.==naps are important! Just look how she has grown up! The Sophia Loren of Dals!

What It Is For....

this blog is for those with Lupus lives to find answers, get perspective and laugh if they can and be brave. Then those of you that are living with a Lupus person in your world maybe you will share your compassion more easily.

Lucky 1997-2011

Hawaiian Proverb

'Ukuli'i ka pua, onaona i ka mau'i.

Tiny is the flower, yet it scents the grasses around it.

said of a small person who gives happiness to others

Rocket 1997-2011

About Me

Lupus is a chronic illness that often camouflages itself. It is up to you to see your body and what it needs to be in the presence of health. Much like a chameleon my art changes to the influences of my world and I am just along for the ride.